Summaries for Patients|21 March 2000

Understanding the Economic and Other Burdens of Terminal Illness for Patients and Their Caregivers

The summary below is from the full report titled “Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers.”. It is in the 21 March 2000 issue of Annals of Internal Medicine (volume 132, pages 451-459). The authors are E.J. Emanuel, D.L. Fairclough, J. Slutsman, and L.L. Emanuel.

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What is the problem and what is known about it so far?

Terminal illness creates many hardships for both patients and the people who care for them. However, the specific nature and causes of these burdens have not been well described.

Why did the researchers do this particular study?

The researchers wanted to try to understand more clearly what factors lie behind the financial and nonfinancial burdens of terminal illness.

Who was studied?

Nine hundred eighty-eight patients who were judged by their physicians to be unlikely to live for more than 6 months, and 893 of these patients' caregivers. Relatives or friends who helped to care for patients daily (not health care professionals) were the kind of caregivers studied. Study participants were recruited from Worcester, Massachusetts; St Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado.

How was the study done?

The researchers interviewed study participants in person about the types of care they needed, the financial and other hardships associated with caring for illness, caregiver depression, how much taking care of patients interfered with caregivers' usual activities, and patient consideration of voluntarily ending their lives.

What did the researchers find?

Over a third of patients reported substantial care needs, such as transportation, homemaking (for example, cooking and housecleaning), personal care (for example, bathing and dressing), and nursing care (for example, administering medications). Poor physical ability, being older than 65 years of age, being incontinent of urine or stool, and having a low income were associated with the greatest care needs. Patients with substantial care needs were more likely to report financial burdens, such as having to spend at least 10% of household income on health care, having to take out loans, having caregivers who needed to work two jobs, or having to spend savings. Patients with substantial care needs were also more likely than those without such needs to consider voluntarily ending their lives. Caregivers of patients with substantial needs were more likely to be depressed and to report that caring for the patient interfered substantially with their own lives. Patients who reported having physicians who listened to the patient and caregiver reported fewer caregiver burdens.

What were the limitations of the study?

This study included patients identified by their doctors and may therefore have selected patients with fewer care needs.

What are the implications of the study?

The needs for daily care are substantial and are important factors in the financial and other burdens experienced by terminally ill patients and their caregivers.

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